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10/08/07Tourette Syndrome—Now What?
Raising awareness about the full spectrum of Tourette's disorder, with support
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Tourette Syndrome Now What?

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Syndrome Message Board and Blog! (An online Tourette syndrome support
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keep up with the latest research, learn how to cope with Tourette's, and post
your questions about Tourette's.)

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updates, latest research on Tourette's, and current Tourette's
information

Tics typically begin at about 6 or 7 years of age, initially presenting in
midline body regions where there are many muscles: the head, neck and
facial region. Movement-based tics are called motor tics.
Involuntary
sounds produced by moving air through the nose, mouth, or throat are alternately
called verbal tics, vocal tics, or phonic tics. Some diagnosticians prefer
the term phonic tics, because the vocal cords are not involved in all tics that
produce sound.

Tics can
be temporarily suppressible for some people, but suppression of tics can result
in an increased burst of tics later. Tics are often described as unvoluntary,
because they can be perceived by the person ticcing as a semi-voluntary response
to an urge to relieve a sensation or feeling that precedes the tic. Adults
or mature children may be more aware of this premonitory urge -- a general
feeling which precedes the tic and can be described like the feeling before a
sneeze, or the need to scratch an itch. The unvoluntary nature of tics, capacity for suppression, and presence of a
premonitory sensation, along with waxing and waning (tics that change over time
in frequency, anatomical location, severity, and number) are the main
characteristics that help distinguish Tourette's syndrome from other movement
disorders. Children are typically less aware of premonitory sensations,
and less able to suppress tics, than adults.

"Tics are a curious assemblage of
abrupt, repetitive movements and sounds. ... Tics are often more easily
recognized than precisely defined. They are isolated disinhibited
fragments of normal motor or vocal behaviors. Said another way, tics
are sudden, repetitive, stereotyped motor movements or phonic productions
that involve discrete muscle groups. They can be easily mimicked and
are often confused with normal coordinated movements or vocalizations. ...
The observed range of motor tics is extraordinary, so that virtually any
voluntary motor movement can emerge as a motor tic.

Motor tics may be described as simple or complex.
Simple motor tics are sudden, brief (usually less than 1 second in
duration), meaningless movements. Common examples include eye
blinking, facial grimacing, mouth movements, head jerks, shoulder shrugs,
and arm and leg jerks. Younger patients often are totally unaware of
their simple motor tics.

Over time, many patients develop complex motor tics,
which are sudden, more purposive-appearing, stereotyped movements of longer
duration. Examples are myriad. Facial gestures and grooming-like
movements such as brushing hair back are commonplace. Gyrating,
bending and more dystonic-appearing movements of the head and torso are also
seen. These complex motor tics rarely are seen in the absence of
simple motor tics.

Simple phonic tics are fast, meaningless sounds or
noises that can be characterized by their frequency, duration, volume
intensity, and potential for disrupting speech. Complex phonic tics
are quite diverse and can include syllables, words, or phrases, as well as
odd patterns of speech in which there are sudden changes in rate, volume,
and/or rhythm. Complex phonic tics are rarely if ever
present in the absence of simple phonic tics and motor tics of one sort or
another.

Included below is a more extensive list of tics which may occur in people
with Tourette Syndrome. Before reviewing the list of tics, please keep in
mind that other movements might be confused with tics. The list below is
only intended to give you an idea of what movements *may* be tics. When
reviewing the list, please keep in mind:

1. Tics can be invisible to the untrained
(or even trained) observer. Some examples of this are tensing of abdominal
muscles, contracting of leg muscles, or breathing tics.

2. Not All That Tics is Tourette’s. There
are many
secondary causes of tic disorders -- referred to as “tourettism” -- as well
as other conditions which include movements that are often confused with tics
(such as the stims and stereotypies of the
autism spectrum, or Stereotypic Movement Disorder). It is important to rule
out other causes of stereotyped or repetitive movements before conferring a
diagnosis of Tourette’s Disorder. One of the important hallmarks of
Tourette's tics is that they are ever-changing in number, frequency, severity
and anatomical location.

3. You may encounter some literature or laypersons referring to “mental tics.” This term, often employed by
laypersons, seems to be due to a blurring of the already fuzzy line between
tics, obsessions and compulsions. Since a subset of
obsessive-compulsive disorder is thought to be genetically related to
Tourette's, and an alternate expression of the Tourette's syndrome gene(s),
there is some blurring of the lines between what is considered a tic and what is
considered an obsessive-compulsive behavior. Here is an excerpt from a
paper, The
Benefits of Reductionism, explaining the definitions endorsed by the Tourette's
Syndrome Study Group:

"A tic is a rapid and nonrhythmic repetitive movement. It
is preceded by a physical sensation (a sensory premonitory phenomenon) in
more than 80 per cent of patients. There is no associated cognition or
anxiety. A compulsion, in contrast, is a stereotyped and intentional
movement that is performed in response to an obsession (an intrusive thought
that is perceived to be senseless to the affected individual). There is a
mental anxiety present prior to the compulsion, with temporary relief after
the act. There is no associated sensory phenomenon. Patients who suffer both
of these pure forms are often eloquent in their ability to differentiate the
phenomena as being respectively 'physical' and 'mental.'

Tics, however, can also consist of coordinated patterns of
sequential movements, in which case they are called 'complex tics' and may
be challenging to differentiate from compulsions.

In the clinical setting, a reductionistic approach makes
most sense. Describe the action as accurately as possible, calling complex
behaviours 'intentional repetitive behaviours' if they are not definite pure
forms." Challenging Phenomenology in Tourette Syndrome and
Obsessive–Compulsive Disorder:
The Benefits of Reductionism

Although the list (below) includes some movements which may actually be
compulsions in some people, the author of this website adheres to the belief in
the benefits of reductionism. Several of the movements listed could be
found in persons on the autism spectrum, and/or could be better described as
obsessive-compulsive behaviors. So, please note that, in any person with
additional diagnoses of autism spectrum disorders, Obsessive-Compulsive Disorder (OCD) or Attention Deficit
Hyperactivity Disorder (ADHD), behaviors or movements might not necessarily be
tics, and could have alternate explanations. This is best sorted out with professional
input from experts in tic disorders and comorbid conditions. Please do not
assume something is a tic because you see it on this list : consult with trained
professionals in cases of diagnostic confusion.

4. You may have encountered the term “full-blown
Tourette’s.” It is not always clear what authors or layperson
are referring to when they use this term, since a person either meets the
diagnostic criterion for Tourette's disorder or not. Some people use the
term to refer to very severe, frequent or disruptive tics, while others use it
to refer to cases which include coprophenomena and echophenomena. Most
people fulfilling the criterion for a diagnosis of Tourette’s disorder probably
have milder symptoms, and many people with more severe symptoms don’t
necessarily have the more complex or socially stigmatizing tics, so the intent
and usefulness of the term “full-blown Tourette’s” is unclear. At
any rate, this is a good time to include a definition of the copro and echo
phenomena found in a minority of people with Tourette's syndrome.

Coprolalia is estimated to occur in less than 15% of patients with Tourette’s
syndrome. The actual percentage may be even lower if we account for the large
number of people in the broader population with milder symptoms who are likely to escape diagnosis
and never come to clinical attention. Studies show that coprolalia is more likely as the number of
comorbid diagnoses increases (for example, a person with ADHD
plus OCD plus tics plus a mood disorder is much more likely to have coprolalia than a
person with tics only).

5. Arbitrariness of the Definition of
Tourette’s Disorder. Many people wonder if a Tourette’s
diagnosis is appropriate, because of confusion over the distinction between
vocal and motor tics, or the requirements for timing and the number of vocal and/or motor
tics for a Tourette’s diagnosis. It is important to keep in mind that the
definition of Tourette’s at any given time is man-made and arbitrary. Here are
some discussions of the arbitrariness of those man-made definitions:

SUMMARIZING: the definition of Tourette’s syndrome is
arbitrary, man-made, and changes over time; the distinction between vocal and
motor tics may be moot, since a vocal tic is just a motor tic
using a specific set of muscles that produce sound; “not all that tics is
Tourette’s;” some complex tics may actually be compulsions in some people, and
many of the movements below could be explained by an alternate diagnosis.
Please use this list only as a guide.

(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
You can browse the pages in the order you desire, but if you're new to Tourette
syndrome,
you may get a better overview by reading through the pages in order, by clicking
on the Next Page links throughout.)